Stage III Melanoma at 20 yrs. Old

Jim_Hall · Regular Joined: 30 Oct 2006 Posts: 48

Hi,

I first had melanoma at the age of 16 but didn't have it diagnosed until 19. I had it removed last year and was told that it was in Stage III with a Clark Level III, and Breslow Depth of 1.50 mm.

It was located in my right eyebrow and was removed with Mohs Surgery. I think it was Nodular Melanoma since it started as a bump and it continued to grow as a tan color. It was also perfect in symmetry.

I asked my dermatologist whether or not it got in my lymph nodes and he basically said he had no idea. Not one of my lymph nodes were checked for cancer during my surgery. He acted very uncomfortable with me talking with him about it. Which leads me to believe that it has spread and I'm just playing the waiting game. He finally referred me to an oncologist nearly a year later, which I have an appointment tomorrow. I suspect that it is a lot worse since skin is thinner on the face.

I have check-ups every three months; as well as a liver function test and chest x-ray every year (which came back negative last year).

Should I be considering other treatments?

Thank You,
Jim

taz · Regular Joined: 31 Oct 2006 Posts: 12

Hi Jim

It sounds like you have the derm from hell there! stage 3 melanoma involves lymph node involvement by its very definition so how a derm can decide you are stage 3 without a SNB I dont know!

Nodular melanoma by its nature is one of the more invasive melanomas, it tends to grow rapidly and it is unlikely that you would have lived with it for three years before diagnosis - it can be tan but it most often dark brown or black. It is also a very rare lesion in someone so young. It is much more likely that you had superficial spreading melanoma - although as you rightly say it doesnt fit the standard ABCDE's

A dermatologist that would wait a year to refer a patient to an oncologist with a suspected nodular melanoma deserves to be struck off - are you sure he actually got the diagnosis right at all.

See what the onc says but I would be getting myself a new derm ASAP, and get someone to re-read the path reports - i wouldnt trust a derm like that further than I could throw him.

I wish you all the best and good luck with the onc. Ensure at the very least he does a SNB and your mind will be put at rest.

Jim_Hall · Regular Joined: 30 Oct 2006 Posts: 48

Sorry there, I wrote tan but it was actually what you said, dark brown. At the time my surgeon commented that he removed all three layers, the dermis, epidermis and the subcutaneous layers.

I must also have the oncologist from hell. He recommended at PET scan, but I also asked if it would pick it up if it was microscopic. Well of course the answer was no, yet he still didn't recommend me having a SNB! He also gave me the answer that it would even be hard to pinpoint the closest node since it was in an awkward place, my eyebrow. Isn't 1.50 mm large enough to have a SNB, especially on the face?

taz · Regular Joined: 31 Oct 2006 Posts: 12

Hi Jim

In my health authority area (over here in the UK) it is standard practise to offer SNB to all patients with lesions of 1mm or greater - also if there are significant other clinical factors such as ulceration, a potential area of regression etc - or indeed severe patient anxiety. In patients with low risk tumours - under 1mm SNB doesnt necessarily prove beneficial in most case, and may indeed add to patients anxiety but 1.5mm would definately qualify under the authority I worked for.

Im not an expert in SNB, and your consultant may well be right in the fact that the head and neck area is an area rich in lymph nodes - however Im pretty sure there are techniques that can be used in this situation.

With regard to the way the onc has decided to handle this - the three years between the lesion initially appearing and your diagnosis, if the tumour was indeed nodular melanoma, would possibly indicate a less aggressive tumour, which is good news from your point of view. In most cases a nodular melanoma untreated for three years would almost certainly have led to clinically apparent mets and clinically palpable nodes by now, so it certainly appears at this stage you are clear and this is excellent. I know it really difficult when a doctor decides to take a wait and see approach - particularly as it is your body, but this is the only reason I can think of why your onc would decide to handle it this way.

Im still a little confused about the staging system your derm used to describe the melanoma - particularly as he said you were Stage 3 - some doctors use Stage 3 to describe all nodular melanoma as they are usually invasive at the time of diagnosis - however this is not strictly true or good clinical practice. The definition we use for Stage 3 is positive lymph node involvement and this has not been proven in your case. It is possible you are only stage 1 or 2 and these carry good to excellent prognoses. Try to clarify the staging system with your onc. In our system you would be T2NOMO - either stage 1 or 2.

I wish you all the very best

lr2006 · New User Joined: 03 Nov 2006 Posts: 3

Jim,

Just a few months ago I was diagnosed with Melanoma myself. I am 23 (so similar in age). My melanoma was categorized at Clark Level IV with a Breslow Depth of 2.00mm found on my right upper thigh. It was a mole that I was suspicious about and asked my derm to remove. She didn't think it looked like melanoma but just to be safe we punched it out. Less than a week later I got the call.

My case was referred to MD Anderson. I live in Houston and feel very fortunate that I am in such close proximity to this facility. There is a self-referral process there and if you seem to be getting the run around from your current doctors (as you seem to be), I would highly recommend you self-refer to a place that will make you a priority and deals with your cancer head-on.

Here is my timeline. ANY doctor that has you wait 1 year to see an oncologist is an idiot as taz stated.

August 8th - Call from Dermatologist with Melanoma diagnosis. Referred to MDA. Took about 4 days for all of my paperwork to be sent to MDA so that I could schedule and appt.
August 21th - First visit at MDA. On this day I met with my surgical oncologist. They had already performed another pathology report on my original biopsy for a second opinion. I had bloodwork done and chest xrays.
August 23rd - They did lymphnode mapping (Lymphoscinitgraphy). Nurse injects a radioactive substance (feels like ant bites for about 2 seconds for each shot) that travels to the lymphnodes which is then mapped on a screen and sent to my doctor. This way, my surgeon could see which lymphnodes fluids travel to. This would determine which nodes to take out during surgery.
August 24th - Surgery. I had a wide local exicison on my thigh (2.0 cm wide, 2.5 cm deep and 8 cm long) and they removed 4 lymphnodes from my groin. I was able to go home the same day and was able to even walk on my leg that day. Most of the pain came a few days later and it still was not unbearable.

I am so blessed because my melanoma had not spread (got that call 2 weeks later). I now see my derm every 3 months for the next 3 years and my surgical oncologist every 4 months for the next 3 years. I feel very fortunate that I had doctors that were aggressive and proactive. I may have a huge scar on my leg for the rest of my life, but a small price to pay. Please keep hope and know that you will get through this! But you must be your own advocate and get the answers you need. Go see another doctor. I know this post is long but the one thing I always wanted to know when doing research was other people's process.

lr2006 · New User Joined: 03 Nov 2006 Posts: 3

One more thing...

If you aren't already doing so, make sure that you are asking for all of your pathology reports and keeping a file of EVERYTHING. If you have not done this, all you have to do is call and they can mail or fax you copies. This will help if you do decide to go to another doctor in the future.

Jim_Hall · Regular Joined: 30 Oct 2006 Posts: 48

Thanks so much for the help guys. As you said lr2006, I really do feel I'm getting the run around and I don't feel like they know what they're doing. I've got a PET scan later this month, I feel like I have to literally pry info from my doctors mouths. Do you mean they can do a lymphoscinitgraphy and find out if there is cancer without having to remove them first to examine them? Since it was on my face where the skin is thinner, is it usually worse than other places? Since yours was 2.00 mm and 4 nodes were removed it would seem like at least 1 of my lymph nodes would be infected at 1.50 mm, course all cases are different.

lr2006 · New User Joined: 03 Nov 2006 Posts: 3

Jim,

No they are not able to see if the cancer has in fact spread with the lymph node mapping. The mapping only shows which lymphnodes the fluids in your body travel to first and most. This does not mean that cancer has spread to them just because fluids travel to them as fluids travel in everyone's lymphnodes regardless of cancer.

The reason they perform the mapping is so they can get a clear view of which ones to remove. They remove the nodes where fluids travel to most readily as those would be the ones that would most likely contain cancer had it spread. They then test those nodes for cancer and most people seem to get results in 1-2 weeks after surgery. If the cancer has spread to nodes, you are considered Stage 3 and you and your doctors will decide what the next steps should be in your treatment. You said earlier that you were Stage 3 but I don't see how that could have been determined if they did not test any nodes (as taz posted).

My melanoma site was about 1-2 inches away from where the groin lymphnodes are located at and mine had not spread to any nodes. It is still probable that yours has not as well. I'm not sure if the thinness of skin makes it more susceptible to spreading or not. A good question to ask your doctor (if he/she will actually answer that for you) Confused

My doctor spoke with me for an hour and half on my initial consultation, never made me feel rushed, answered every question and then some. Hopefully you will find a doctor that will do the same.

tokmik · New User Joined: 04 May 2009 Posts: 1

Melanoma is a mean tumor. I might say that living three years is a very positive sign. Traces of melanoma cells in lymph nodes from three years ago would worry me, as would enlarged lymph nodes at this time. Telling you that there were melanoma cells in the nodes , but they can't use that information because it came from study doesn't make sense to me. I would not now be satisfied with an ultra-sound report of "benign lymph node". Get a second opinion from another oncologist, preferably university affiliated, to review your whole record. I would want to know why I wasn't getting an MRI and a biopsy of the present node. There are effective chemotherapies available now, but delay is not in your favor. You can't get good medical advice on a board. Get a credentialed oncologist to review your case. I would not be afraid to raise the issue of mal-practice law suits if I did not see more action on their part.
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